Author: jennybuncombe

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Christmas can be a difficult time for autistic children and their parents. Everything becomes brighter, noisier, more bustle, activity, routines change, the expectation is to be happy and enjoy the presents, the food, the party games. No respite from this whether at home or at school, either!

Sensory overload:The house can look and smell and sound very different at Christmas – to keep one room the same as usual and not decorated can allow the autistic young person a place of reassurance to escape to when necessary.

Presents: Perhaps your autistic child would really prefer to know what they are getting for Christmas – that way they can enjoy the anticipation of getting it without the anxiety of not knowing, not to mention the anxiety around the expectation from the gift-giver of gratitude whether or not it’s something the child likes. Is the surprise element really about the autistic recipient or is it  about the anticipated gratification of the gift-giver?  Maybe the child would be ok knowing what their major present will be and can then tolerate the mystery and uncertainty of other gifts.

Food: Christmas food is not the same as day-to-day meals! Many autistic children and adults cannot tolerate certain textures or colours or tastes and enjoy what others might consider a boring or restricted diet (more about diet in another blog post) and what looks and smells to most people as delicious and mouth-watering can seem revolting to an autistic person. Serve the child’s usual food while letting them know that they can also try the Christmas food if they want to.

Changes in routine: Try and make this spontaneous period of festivities more predictable – perhaps a family calendar showing what is happening over the Christmas break. Make sure to include noting down when nothing is planned – free time – and when that period of free time ends, so that there is also some structure to that.

Party time: Allow your child to escape to their bedroom or a quiet room when the party gets too much and don’t make demands that they join in. Social gatherings can be very hard for autistic individuals who may struggle with small talk. Giving them a role, such as taking round a tray of food or drinks can help. All they need to say (if anything at all) is ‘would you like one?’ It means that they can be part of the event without the usual anxiety associated with social engagement.

Your autistic child or young person’s ideas of what makes them happy and comfortable may not be yours or those of other family members or friends. It’s what makes them feel good that matters even if it doesn’t do it for you!

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When behaviours are seen as challenging, teachers and other adults need to ask why – why are these behaviours happening? They might appear to arise out of the blue, but they will have a cause. It’s just that the cause is not obvious if we’re thinking about how a typically developing child might respond to events or environments. We need to get our heads round how autistic individuals respond to events and environments, or we will not be able to get to the root of it. Schools would benefit enormously from routinely using  ABC charts or similar (for an example, go to https://www2.oxfordshire.gov.uk/cms/sites/default/files/folders/documents/childreneducationandfamilies/informationforchildcareproviders/goodpractice/sentoolkit/ABCchart.pdf) – these are ways of examining and recording the circumstances, environment and events prior to and following the behaviour, so that either triggers or reinforcers (inadvertent rewards) might be revealed or indicated. This then allows for modifications to be put in place to avoid or better manage future incidents. This does not have to be either expensive or too time consuming, especially when it reaps benefits in time and upset saved in the classroom dealing with what can be pretty disruptive behaviours, not to mention the distress it causes for the autistic child himself. Children with autism do not enjoy meltdowns. They do not have meltdowns because they want to disrupt or offend. They do not choose to have a meltdown. Meltdowns cause great distress for the child and can lead to the child feeling even worse about themselves than they already do. Meltdowns are usually the result of the child becoming too anxious, feeling too challenged, feeling swamped and unable to cope or being presented with something unbearable. The reasons for this are many and varied, which is why it is vital to know the individual child as well as the specific circumstances. Reasons include sudden changes of plan, confusion as to what is expected, misunderstanding of expectations or of what was said, others’ unpredictable behaviours, sensory overload, perceived or real injustices, being told to ‘hurry up’, not knowing what is expected and so on. The typical world of the child with autism (and many adults) is one of permanent anxiety where things are expected but not explained or prepared for because ‘they are obvious’. Not to the autistic individual.

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Today we have an ever increasing number of excluded children, particularly within the autistic population. They are excluded because their behaviour is deemed unmanageable and disruptive to others. There is no higher a proportion of children with autism now than there ever was, of course, just an increase in diagnosis. No one seems to ask why they are behaving in this way, or looking any further than punishment or removing the problem. No child sets out to be difficult, disliked or punished. Children seek approval and praise – they work for reward, just like adults work for the reward of job satisfaction and/or money or appreciation or recognition. Reward is highly motivating, punishment is not. So what is the behaviour achieving for them? Are they getting the reward of being sent home, where they feel safe? Does the behaviour result in the unwanted event stopping? Does the behaviour result in an interesting effect on others which is fascinating to watch? Is the behaviour the result of intolerable sensory overload? Is it a result of extreme frustration? Is it the result of anxiety and panic because they do not know what is expected? The very institutions that are excluding these children can often unknowingly be a cause of the behaviours they then punish. What a vicious circle this is.

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‘Neurotypicals’ (NTs), be observant next time you are part of a group conversation and note how inexact we often are with our words and the repetitiousness of our speech, saying the same thing more than once and often using slightly different words each time.  For the person with autism it means they have already spent some time processing what you have said, only to have to start all over again when you say it again a little differently. Think of clicking a computer mouse – every time you click, the computer has to start the processing all over again. It’s similar for those with autism when you fail to allow them time to process but interrupt by saying it all over again or not allowing them time before saying something else. This does not mean one has to be patronising in one’s speech, just clear and unambiguous and give the autistic person time to process and formulate their response.

Longwinded sentences can lose the autistic listener who might remember the first bit or the last bit or just get lost along the way. We often make the mistake of asking the autistic child to do a series of tasks – go upstairs, get your school bag and pick up your shoes on your way down. The child is likely only to remember the first request and then gets into trouble for not doing as asked. We also make requests such as ‘Go and tidy your room’, which is far too vague. We know what we mean but how is the child with autism supposed to know that this means “pick up your dirty clothes from the floor and put them in the washing basket, then put any books back on the book shelf, then collect all the coloured pencils and put them back in your pencil case, then make a neat pile of your notebooks and put them on your desk” and so on. We need to detail what is required, one task at a time. Many adults also benefit from this kind of detail and clarity (and not all of them autistic!).

Let’s look at a pretty typical scenario from the perspective of a child with AS – the child may have heard the following:  ‘OK time to go to the shops, let’s get your coat on, now where did I leave the shopping list….do we need more cereal/ I’ll just check. Where are your shoes?! Put the iPad down, we’re going out. Wait a sec, I need the umbrella. Where did I put the car keys.  I said get your coat!’ Remember what we said above, about clear, direct communication! By this time the child is likely to have hands over ears, possibly vocalising to keep the noise out. He won’t have heard anything useful or informative. A better alternative might be: ‘In five minutes, we’re going to go in the car to the supermarket. We’ll do the shopping and then get back in the car and come home’. None of any of the rest of the previous sentences were needed. This is all the information that the child needs to make sense of what’s going on. Obviously I should point out that no child will be exactly the same as another in their ability to make sense of the typical NT style of speaking, but this example gives the general idea.

It is not just children who get lost in our verbosity. I have often heard men with autism complain that they lose track of what their partners are saying because there’s just too much language to process in one sitting. Then of course, their wives or partners get irritated because their partner ‘has not been listening’. They do not understand that their partner has been overwhelmed by the sheer quantity of language they use and that their language may also be repetitive (to drive the point home), vague or convoluted. Once again, the solution is not to become patronising as though talking to a small child, but simply to understand the difficulty and change speech style accordingly, making it clear, unambiguous and concise. NTs are supposed to be the flexible ones, remember and this really is not asking all that much. If it results in an increased understanding of the other and an improved relationship, how worth it is that?!

 

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“It’s like Windows trying to communicate with Applemac”, said one of my clients, describing typical communication between ‘neurotypicals’ and autistic people. He went on to say ‘Both are valid operating systems but they can’t communicate without specialist software’. That’s where you come in – whether a counsellor, teacher, carer, parent or anyone living with or working with or caring for autistic children and adults. You need to be able to become that software and learn what the autistic person is likely to actually mean and intend – without ‘reading between the lines’ and inserting your own assumptions about what they meant. Most of us are pretty sloppy in our communications with others. We know our listener will ‘get’ what we mean, even where we omit quite a lot of information. We tend to use too many words, we ramble, we leave sentences unfinished, we are not precise in our choice of words, we use non-literal phrases and sayings. We operate in the knowledge that there is a mutual language system operating in our listener and so they will know what we mean despite all this sloppiness. We also assume that we have correctly understood what they are saying because they are also using the same system as us. But this is not the case when we are talking with autistic people. Autistic people understand each other perfectly well when they are communicating together – it is when a non-autistic person is speaking with an autistic person that miscommunication often occurs.

The difference in use and understanding of language directly reflects the differences in cognitive processing – thinking – that lie between the autistic and non-autistic person. Understanding differences in cognitive processing also allows us to understand and predict differences in behaviours. This is why we need to understand what those cognitive differences are if we are to be able to communicate effectively as well as understand and support the autistic individual. It is not a simplistic tactic of adopting a set of strategies – that will only help so far. What is needed is a fundamental grasp of the underlying cognitive processes. This may sound complicated but it really is not. Learning how autistic people are likely to be thinking and seeing things is really not rocket science, but it is essential if we are to make any progress in reducing the excessive levels of anxiety that autistic people experience day to day and if we are to become effective in supporting them in our roles as counsellors, teachers, carers, parents.

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It has recently come to the attention of the press and the current government of the UK that there is a high number of children who are refusing to return to school following the Covid pandemic. This should not come as a surprise to anyone who knows anything about special educational needs and the paucity of provision for this large number of children and young people.

In the UK, the majority of young people with autism are expected to attend mainstream schools. There are mainstream schools existing which provide accessible and helpful support for young people with autism but here, I am focusing on the vast majority which do not and which may pay lip service to the idea of supporting those with autism but fail to put this into practice. All too often even where there are aims agreed at management level and set out in the school’s prospectus, these do not translate into practice or understanding in the classroom. Even where the parent has been through the time-consuming, frustrating, drawn-out and exhausting battle to obtain an EHCP (Education, Health and Care Plan) for their child, this is far from a guarantee of appropriate support or understanding of their needs. It is no better now than it was 30 years ago – indeed, it is harder to obtain an EHCP now than it was to obtain a Statement of Special Educational Needs, which the EHCP replaced. It was designed to be so. The excuse was that with better support being provided by schools, fewer children would need an EHCP. Sadly, that better support did not materialise.

As a society we highly value, even over-value academic learning yet at the same time our schools fail spectacularly to nurture this in academically able students with autism. Typically, autistic children and adults soak up information like blotting paper soaks up ink when it comes to subjects in which they are interested. They very often have encyclopaedic  knowledge of such subjects and that should be a key to learning. Instead, we try to force triangular students into the square holes of our educational system and then punish and discard them when they don’t fit. We throw away brilliant minds because of our own rigid and inflexible attitudes toward schooling and teaching. We should be making use of their interests and focusing on them not only for their own sake but as a means of introducing related subjects, expanding interests and as teaching tools for other subjects.

As it is, not only is mainstream education not designed to benefit the autistic child, but rather, we could not have devised a system more likely to be torture for those on the spectrum.  It is another example of our way of top-down designing rather than looking at the needs of the children and how best they learn, not just what we as a society believe they should learn and how they should do this. Too many schools purport to understand autism and to support autistic children and young people, yet in practice, these young people are punished for being different, for not getting homework in on time, for being rude, for not understanding hidden rules that they were not been told about, for not trying more to fit in with the others, for being late, for being disorganised, for not wearing uniform correctly, for not having the right books for the class, for not mixing in, for not contributing to group work, for running out of class, for refusing to eat in the canteen, for behaving in ways that look odd or aggressive, for not following school rules that are illogical or irrelevant, for having meltdowns and more…

How good we are at punishing and how poor we are at investigating what underlies these behaviours and difficulties. It really is not rocket science, yet schools do not read the literature or listen to autistic people. Lack of funding is often blamed, but how much does it cost to read a few books or to go on YouTube and listen to autistic people explaining how it is for them and what helps. And the biggest irony is that if we designed schools as though all children were autistic, every child would benefit, whether autistic or not.

 

 

 

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Accepting the diagnosis
Painful though it may be initially, acceptance of your child’s difference is crucial for both you and your child. For you because resisting the diagnosis prevents you from learning ways of opening up communication with your child. Resistance prevents you entering the fascinating, sometimes bizarre, sometimes baffling, sometimes infuriating, sometimes exasperating, often funny, often surprising and always edifying world of autism. Resistance leads you to trying to force your square peg child into the round hole of the neurotypical (NT) world. The result is frustrated and angry and worried parents and a distressed and angry child. Or worse, a distressed, angry and highly anxious child. However much you might wish it, your child does not think like you, may not enjoy the things you think he or she ‘should’ enjoy, does not experience the world as you do. Your child is likely to have interests and fascinations that appear baffling to an NT but which bring great satisfaction to the child, whether a spinning wheel, manufacturers’ marks on drain covers , electricity pylons or collecting car registration numbers and he or she is likely to acquire an encyclopaedic knowledge on any special interests.

Acting a part is exhausting
As your child grows up, he or she may desperately want to acquire the skills which enable smooth interaction with family and friends. Many people with autism realise that to be acceptable to others (NTs) they have to pretend to be like them – to mimic social behaviours. They may spend a lot of time observing NTs and copying what they see. They can often be so successful at this that NTs don’t believe they have autism and so make no allowances for it. That results in social interaction becoming even more demanding for those with autism as they struggle to work out whether that was a joke or an insult, whether that was literally meant or whether they were expected to ‘read between the lines’, whether they responded appropriately, whether the laugh they got in return was ridicule or appreciation and so on. They spend their days in pretending to be who they are not. They feel that they are acting a part and are not allowed to be who they really are. This is exhausting, not to mention humiliating and it can often be a huge relief to get home, shut the door on the NT world and try to shake off the anxieties of the day knowing they will be facing them again tomorrow and the next day and the day after and the day after that…
It is not surprising then, that one more demand on reaching home – however reasonable it may seem to the NT – can be the final straw and a meltdown ensues to the anger of the NT and the distress of the child. Establishing a homecoming routine can be very helpful to both parent and child. For example, it could be that the child comes home and can then disappear to his/her room for an hour, after which is dinner, after which is homework (time limited not task limited!!), after which is TV or tablet after which is bath and bed (or whatever routine best suits the needs of the child and the household). The benefit of such a routine needs to be anticipated before it is needed! Best to put in place as something that is expected as part of the new venture of going to school. Where there is change, there is also the opportunity of putting in place new ‘rules’ around routine so they are known about and expected.

Too often the response is to punish or suppress unwanted behaviours which does nothing to help the child avoid such distressing experiences. Neither does it help the parent (or teacher) as it does not allow them to make changes which can avoid such responses from the child. Seeking and understanding the cause/s of difficult or challenging behaviours allows the development of strategies to avoid or better manage them – a relief for both parent (or teacher) and child.

This diagnosis is not ‘labelling’ a person, but enabling them and others to learn and understand how differently the individual with autism sees things and to make adjustments to ease their passage through the world (which is not designed to be a comfortable or easy place for anyone with autism).

We don’t think of it as labelling to explain that someone is colour blind, but a helpful piece of information. So instead of becoming impatient with the colour-blind child as they persist in failing the colour-sorting task and insisting they do it again until they get it right, we realise that this task is not within their power to achieve without support. We realise that we then need to teach the child strategies for times when it is important that distinction is made between colours (eg; the sequence of traffic lights).

Even today, with all the increased knowledge about autism, I read a letter from a CAMHS psychiatrist which still clearly shows a lack of understanding that autism is by definition a developmental disorder, so that the difficulties experienced by his patient must be understood in the light of the diagnosis of autism rather than a  personality disorder resulting from life history and events.

You cannot understand the person with autism unless you understand what autism means – a different brain, processing differently from the ‘norm’. To read autism as a personality disorder is not only unhelpful for the clinician as little progress will be made, but can be damaging and confusing for the autistic individual themselves.

I suspect that many individuals are misdiagnosed as Borderline Personality Disorder and other conditions because too few clinicians are familiar with the (however subtle) profound differences inherent in autism.